Predictably, there was an immediate backlash from groups like Planned Parenthood, the mainstream media and others.

A Bit of History

In 2008, the Prenatally and Postnatally Diagnosed Conditions Awareness Act was signed into law by President George W. Bush. This law, co-sponsored by Senators Edward Kennedy (D-MA) and Sam Brownback (R-KS), was meant to provide parents receiving a pre- or post-natal diagnosis of Down syndrome or other disabilities – like cystic fibrosis and spina bifida – more information and support than had been available in the past. It was inspired by the words and actions of Brian Skotko, who has a sister with Down Syndrome and who is now a board-certified medical geneticist and Co-Director of the Down Syndrome Program at Massachusetts General Hospital.
Among other provisions, the law was written to:

coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for Down syndrome or other prenatally or postnatally diagnosed conditions, including—

the establishment of a resource telephone hotline accessible to patients receiving a positive test result or to the parents of newly diagnosed infants with Down syndrome and other diagnosed conditions

the establishment of a national registry, or network of local registries, of families willing to adopt newborns with Down syndrome or other prenatally or postnatally diagnosed conditions, and links to adoption agencies willing to place babies with Down syndrome or other prenatally or postnatally diagnosed conditions, with families willing to adopt

the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for Down syndrome or other prenatally or postnatally diagnosed conditions, to patients. (Emphasis added)

But while such positive initiatives went unfunded, funding has been no problem for companies developing prenatal screening tests that can be done ever more easily and earlier in pregnancy. Currently, there is a “cell-free DNA” blood test for expectant mothers that can be done as early as 10 weeks into a pregnancy that claims near perfect accuracy in detecting Down Syndrome and other conditions.

“Given the potential for inaccurate results and to understand the type of trisomy for recurrence-risk counseling, a diagnostic test should be recommended for a patient who has a positive cell-free DNA test result.”

and

“Management decisions, including termination of the pregnancy, should not be based on the results of the cell-free DNA screening alone.” (Emphasis added)

One reason that women seek abortions is because they don’t want to have a child with Down syndrome. Recently there has been a movement among people who have had children with Down syndrome to say, “That rate of abortion indicates bias. It’s not really choice. It’s fear of Down syndrome. It’s prejudice against Down syndrome.” Some families who have had children with Down syndrome say that they mean a lot to their family; that it has been a great experience to have a child even though the child has Down syndrome; they accomplish a lot, they’re happy, and people have the wrong view about it.

Some have gone further and started to change state laws to say that when you get a positive test for Down syndrome, you are required to get in touch with the Down syndrome associations in your state and get the message that balances the bias that no one wants a kid with Down syndrome.

The problem is that far too many medical professionals themselves seem to have a negative bias when it comes to conditions like Down Syndrome and see no “upside” to Down Syndrome versus abortion. New or expectant parents deserve better, especially when that professional is giving them their baby’s diagnosis.

I found that out personally not only when I had my daughter Karen but also when I talked to other parents who encountered negative attitudes from some medical professionals.

Eventually, we developed an educational program for hospital maternity divisions about how to help new parents of children born with disabilities. I always brought a child with Down Syndrome and his or her parent to these programs and the reaction was amazing. Doctors and nurses who only saw upset parents before now heard from these same parents about the challenges and very real joys of life with their child. Even better, these professionals were charmed by meeting the children themselves.

We found that changes in attitudes and information can change future outcomes for the better for children and their parents.

Conclusion

It is natural to feel shocked and overwhelmed when you are told either before or after birth that your baby has a condition. Panic and fear is not uncommon.

But it is at this vulnerable time that parents especially need the accurate information, resources and support that the Kennedy-Brownback law was designed to provide.

Unfortunately, we have groups like Planned Parenthood that demand legalized abortion at any time during pregnancy for any or no reason at all as a civil right. However, that must not stop us from continuing to strive for a compassionate society that protects every human life, promotes accurate information and fights discrimination at the same time.